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Shocked 52 year old with Gleeson 9

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User
Posted 03 Feb 2017 at 02:45

Hi,

First post as just diagnosed yeterday with a Gleeson score of 9 and the understanding that the cancer found in recent biopsy is "aggressive".

I have had 3 PSA tests in the last 5 months 4.5, 5.9 & 4.5 and had a biopsy two weeks ago which hurt like hell - still realing and feeling uncomforatble now.

Still in total shock and sitting here typing this post at 2.30am - more worried about my wife and kids and how long I have got than anything else.

Bit of a blur yesterday but I remember asking why they cant remove my prostrate immediatley but understand I have to await MRI & Bone scan first which is confusing.

I have little or no other info and just sitting awaiting the next call but understand there has to be a time lapse after biopsy before further tests which again is confusing.

Does anyone know the survival rates after Gleeason 9 diagnosis?

Tony.

User
Posted 04 Feb 2017 at 10:02

Yes important to have at least 2 weeks after biopsy before getting the MRI - the images can't differentiate between grey areas due to tumour and grey areas due to bruising from biopsy, areas of infection, etc.

If I could wave a wand over urology departments I would produce stickers saying "aggressive does not necessarily mean advanced" to give to newbies.

Even with scores all in, there is no way of predicting how you will do or for how long. We had a dear friend on here diagnosed with a low PSA/low Gleason/low grade cancer for whom no treatments worked. As you can see above, we have others here diagnosed with 'aggressive' cancers who remain well for many years. I am not sure that we get many with G9 or G10 who achieve proper remission but then, I don't really believe that anyone is ever truly cured

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Feb 2017 at 12:59
Hi Tony,

I know you don't want to be here (none of us do!) but welcome anyway. I can't really give much input on the Gleason side as mine was 7 but I did have a complete 'mare with the biopsy. For me it was very painful afterwards, I passed what seemed gallons of blood (with clots) and I suffered Septicemia afterwards. The biopsy is a very varied experience for everyone, some are back to work the next day, others (like myself) have bad times with it.

On the Gleason 9 front there are lots of encouraging stories on here, I think as Lyn says, the 'aggressive' word is a bit OTT. It is aggressive in prostate terms, but the cancer in general is slow growing compared to other cancers, and there are lots of treatments available with more becoming available all of the time.

Hope this helps,

Mark

User
Posted 03 Feb 2017 at 02:45

Hi,

First post as just diagnosed yeterday with a Gleeson score of 9 and the understanding that the cancer found in recent biopsy is "aggressive".

I have had 3 PSA tests in the last 5 months 4.5, 5.9 & 4.5 and had a biopsy two weeks ago which hurt like hell - still realing and feeling uncomforatble now.

Still in total shock and sitting here typing this post at 2.30am - more worried about my wife and kids and how long I have got than anything else.

Bit of a blur yesterday but I remember asking why they cant remove my prostrate immediatley but understand I have to await MRI & Bone scan first which is confusing.

I have little or no other info and just sitting awaiting the next call but understand there has to be a time lapse after biopsy before further tests which again is confusing.

Does anyone know the survival rates after Gleeason 9 diagnosis?

Tony.

User
Posted 03 Feb 2017 at 11:46

Hi Tony,

Welcome to the forum although I'm sorry that you find yourself here.

Ok, first take a deep breadth.  A Gleason score of 9 does put you in the high risk category (of the cancer spreading outside the prostate within a few years), but your PSA is quite low, which suggests it's localised and therefore curable. The MRI scan and bone scan will help confirm this and also point the way to the best treatment, of which there are many.

Yes, these are unsettling times, but time is on your side.

Therefore, I would reading some of the great publications on this website

http://prostatecanceruk.org/prostate-information/just-diagnosed/dealing-with-my-diagnosis

There are also trained prostate cancer nurses who can give you reassurance, contactable by phone or email...

http://prostatecanceruk.org/get-support/our-specialist-nurses

Of course, there are many of us too on this forum.

re. survival rates, survival rates depend on many many things not just Gleason score: your age, your staging (which your MRI and bone scan will give you), your state of health, your treatment pathway etc. etc. etc.  

Here are some stats from Cancer Research UK....

For men with prostate cancer in England and Wales

  • around 95 out of 100 (around 95%) will survive their cancer for 1 year or more

  • almost 90 out of 100 (almost 90%) will survive their cancer for 5 years or more

  • more than 80 out of 100 (more than 80%) will survive their cancer for 10 years or more

 

So, I hope that eases your mind a little.

Keep us posted

Flexi

 

Edited by member 03 Feb 2017 at 11:52  | Reason: Not specified

User
Posted 03 Feb 2017 at 12:36

Hi Tony
Welcome to the most supportive forum I have ever found. Most of us know exactly where you're at - there's a world of unknowns going on, and knowledge can seem hard to get. I echo all of what Flexi (above) has said, get on the phone and speak to the nurse specialists. The MRI will give so much more useful information, and the bone scan will decide the direction of treatment as well. To be honest, I'm a bit envious of your PSA readings (mine were 21+), but the rest so far has been the same as yours. What I wasn't told but have learned since is that prostate cancer is a slow burner (rather than some which are very fast acting) which does explain why the medics are taking each step at a time. This is a good thing! The time will allow them to get the best picture of what is going on, and for them and you to decide the best treatment based on that picture.

Wishing you all the best, and please to do this forum, even if it's just for reading.

cheers
G

User
Posted 03 Feb 2017 at 12:43

Hi Tony,

I was diagnosed with Gleason 9, at the tender age of 54, here I am ten years later, with a current PSA of 0.4, and no plans to meet St Peter any time soon.

All of us on this site know how terrible it is to be diagnosed with PCa (Prostate cancer), and how difficult it is to talk things through with our wives and sweethearts.

The best advice I can give you, is accept that you have had a shock and don't beat yourself up about having to make quick decisions, this cancer, ever G9 isn't that aggressive, you have plenty of time to take stock of your emotions, read and research as much as you feel you need to know, and then in a few weeks time, when the emotional dust has settled, and the results from your bone scan are through, you will be able to decide what treatment option you prefer.

We try to live by the dictum that 'I've got cancer, but cancer hasn't got me'.

Right at the moment, I am giving far more thought to how I will keep the grandchildren amused at half-term holiday, than I am about my next stage of cancer treatment.  Life is for living, since diagnosis I have been blessed with grandchildren and wonderful holidays, Amsterdam, Corfu, Malta, Tenerife, Madeira, Toronto, even a week in Penzance.

So cheer up, you can have lots of fun and live many years with a Gleason 9 diagnosis.

:)

Dave

     

User
Posted 03 Feb 2017 at 12:56

And from another Gleason 9; I'm still bouncing around 3.5 years after being diagnosed. When I was first diagnosed I thought I'd be dead by Christmas. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

User
Posted 03 Feb 2017 at 13:07

I think it helps if you understand that aggressive doesn't mean what you imagine. It makes it sound like the cancer is running amok and taking over your body but generally that isn't the case.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Feb 2017 at 13:19

Just to welcome you to the site. The others have it all covered with their advice although apart from the link that flexi gave you could look at downloading the whole Toolkit which is available from Publications.

Lots of info in there.

Anything you want to know just ask, somebody is likely to have been there, done that and has bought the T.Shirt

No question is silly or too personal.

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 03 Feb 2017 at 14:38

Tony

 

I'm 46 and Gleason 9.  I had my prostate removed just before Christmas.

The thing which honestly helped me most were the guys (and wives) who told their stories of Gleason 9 and how they are still around many, many years later.  It made me realise that I'm not going to die anytime soon and have several really good quality years to look forward to.

You'll be in a better place once you've had your scans as at least you'll have a lot more information.  The waiting around is tough.

Everyone on this forum is helpful and encouraging and some people are very knowledgeable.  The PCUK specialist nurses are great too - give them a call.

You'll have people on this forum who will walk with you through the journey.  

Walter

User
Posted 03 Feb 2017 at 15:56
Hi I am 51 Gleson 9, diagnosed 30 months ago, like I imagine you are going through I thought it was the end however since then I have run marathons, completed in ultra marathons accross the Sahara and am still running, I am doing a 66 mile race tomorrow so there are lots of reasons to bllieve that you will be here for ages. That said, cancer has made me live for every day and bizarrely I have probably had a better life for the last 18 month so than I would have done before as I love life more than ever.

There are lots of us here not just hanging on but standing tall still so keep posting, asking questions and above all believe, never give up!

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 04 Feb 2017 at 07:49

Originally Posted by: Online Community Member
I think there should be more thought goes into how these things are explained initially although I do understand it pays you at times to prepare for the worst.

Aye, I well remember the exact words when I was told I had advanced prostate cancer that couldn't be cured but could be treated. With treatment, I was told I could have "many more months or years". I immediately noticed she didn't put a 'many' in front of years.

Originally Posted by: Online Community Member
Did anyone still have discomfort almost 2 weeks after their biopsy as I still feel a bit raw down there?

My prostate settled down quite quickly as I remember, a bit of blood in the poo for a couple of days, walking around like John Wayne for a few more days and after that all OK. The biopsy was a real bowl of roses. The first 3 clicks and I thought "what's everyone talking about, this doesn't hurt, it's a walk in the park". The next 3 clicks, "oh, what's that, I felt that". The next 3 clicks "ouch, I don't like this at all". The last 3 clicks and I'm sweating like a stuck pig. A pretty nurse held my hand though so that helped a lot.

Originally Posted by: Online Community Member
My concerns at present are that I have sufferred from extreme tiredness and fatique for a few years now and it may just be paranoia but I have a lot of aches and pains which as yet are unaccounted for?

I know it's hard but whatever you can do in the way of exercise will help with alleviating fatigue and aches and pains.

Originally Posted by: Online Community Member
Anyway understand its not worth me fretting until after MRI & Bone scan - if I had biobsy 2 weeks ago, then when can I expect these tests. Is it right that I have to wait a full 4 weeks after the biopsy until the tests can take place.

Can't help on this one, I had MRI, CT and bone scans prior to the biopsy.

User
Posted 04 Feb 2017 at 14:14

Hi Tony ,the words aggressive freaked us out too , my OH was diagnosed just over a year ago and thought our world had ended, like you Gary is Gleason 9 PSA 23 ,his biopsy was luckily straight forward with scans being done about 2 weeks later ,Mri took a bit longer as it was over the Xmas / new year period .when Gary went for results not long after scan his unfortunately had gone into lymph nodes . Treatment was started that day with hormone tablets followed 2 weeks later by the 3 monthly hormone injections .Chemo was advised and was started pretty quickly (6 sessions 3 weeks apart ) PSA levels came down pretty sharpish and he had very few side effects ,mainly muscle aches and tiredness .garys now on stampede trial arm j and doing well ,still working hard but at a slower pace and relaxing more when home ,
It's still a struggle to accept results but we can go long periods of time without it being our main topic of conversation .
Best wishes to you and family
Debby

User
Posted 05 Feb 2017 at 13:15

 tony 194

 Hello mate i have recently been diagnosed  with a gleeson score of 9 but higher PSA i too was in total shock upon the news of my cancer   its not easy, however my family are strong and they know i will need to lean on them, finding this forum is a huge help to me too Gleeson 9 is high my friend but its not the end of the world we will all help you during this time stay strong and keep in touch.

 

Baldyman

User
Posted 07 Feb 2017 at 13:27

Hi Tony,

The"high risk" and "high grade" relates to the Gleason Grade of G9. Here's some further information from Cancer UK...

http://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/localised-prostate-cancer

The back, neck and foot ache is unlikely to be related to PCA considering your low PSA score. I'd make an appointment to discuss these with your GP.

Flexi

 

User
Posted 18 Feb 2017 at 12:11
Great news on the bones, something to celebrate. Sadly, waiting is something we all have to get used to on the Prostate cancer bus, for you it's a scan and then result then it will be PSA tests regularly to see how the cancer is behaving on whatever treatment reigeme you are on. I am not trying to depress you but help in a small way that this is the new norm. I have a bone scan and PSA result meeting 1st March but I have realised over these last two years that worrying about it too much before is a waste of life (that said it is natural to worry a day or so before still). You can't change the results now but there will be things you can change in your life to make it better so do those things instead.

How are your back pains since biopsy, hopefully they have gone away now? Thats one "test" we won't need again, rejoice!

Enjoy the weekend

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 02 Mar 2017 at 07:22
Thanks mate appreciated - we have another thing in common "whippets" just bought a puppy similar to the one in your profile LOL.
User
Posted 02 Mar 2017 at 07:28

With regard to the decision on using the comprehensive private medical insurance, I'd go private because:

1. It saves the NHS money.

2. Providing it really is comprehensive, your uro/onco will be able to proceed with whatever treatment they believe is best for you and not be subject to NICE guidance or local funding constraints.

User
Posted 02 Mar 2017 at 08:44
Thanks

I have private medical insurance. Try getting back into a private hospital on a Saturday morning when you are in retention, where do you finish up ? In the NHS Hospitial. It does help if your private consultant also works at the NHS Hospitial. My hospital has a Urology ward so most of the nurses are very experienced with urology issues.

As already said the NHS support network is there. In my hospital we have a direct line to someone in Urology 24/7.

Thanks Chris

Show Most Thanked Posts
User
Posted 03 Feb 2017 at 11:46

Hi Tony,

Welcome to the forum although I'm sorry that you find yourself here.

Ok, first take a deep breadth.  A Gleason score of 9 does put you in the high risk category (of the cancer spreading outside the prostate within a few years), but your PSA is quite low, which suggests it's localised and therefore curable. The MRI scan and bone scan will help confirm this and also point the way to the best treatment, of which there are many.

Yes, these are unsettling times, but time is on your side.

Therefore, I would reading some of the great publications on this website

http://prostatecanceruk.org/prostate-information/just-diagnosed/dealing-with-my-diagnosis

There are also trained prostate cancer nurses who can give you reassurance, contactable by phone or email...

http://prostatecanceruk.org/get-support/our-specialist-nurses

Of course, there are many of us too on this forum.

re. survival rates, survival rates depend on many many things not just Gleason score: your age, your staging (which your MRI and bone scan will give you), your state of health, your treatment pathway etc. etc. etc.  

Here are some stats from Cancer Research UK....

For men with prostate cancer in England and Wales

  • around 95 out of 100 (around 95%) will survive their cancer for 1 year or more

  • almost 90 out of 100 (almost 90%) will survive their cancer for 5 years or more

  • more than 80 out of 100 (more than 80%) will survive their cancer for 10 years or more

 

So, I hope that eases your mind a little.

Keep us posted

Flexi

 

Edited by member 03 Feb 2017 at 11:52  | Reason: Not specified

User
Posted 03 Feb 2017 at 12:36

Hi Tony
Welcome to the most supportive forum I have ever found. Most of us know exactly where you're at - there's a world of unknowns going on, and knowledge can seem hard to get. I echo all of what Flexi (above) has said, get on the phone and speak to the nurse specialists. The MRI will give so much more useful information, and the bone scan will decide the direction of treatment as well. To be honest, I'm a bit envious of your PSA readings (mine were 21+), but the rest so far has been the same as yours. What I wasn't told but have learned since is that prostate cancer is a slow burner (rather than some which are very fast acting) which does explain why the medics are taking each step at a time. This is a good thing! The time will allow them to get the best picture of what is going on, and for them and you to decide the best treatment based on that picture.

Wishing you all the best, and please to do this forum, even if it's just for reading.

cheers
G

User
Posted 03 Feb 2017 at 12:43

Hi Tony,

I was diagnosed with Gleason 9, at the tender age of 54, here I am ten years later, with a current PSA of 0.4, and no plans to meet St Peter any time soon.

All of us on this site know how terrible it is to be diagnosed with PCa (Prostate cancer), and how difficult it is to talk things through with our wives and sweethearts.

The best advice I can give you, is accept that you have had a shock and don't beat yourself up about having to make quick decisions, this cancer, ever G9 isn't that aggressive, you have plenty of time to take stock of your emotions, read and research as much as you feel you need to know, and then in a few weeks time, when the emotional dust has settled, and the results from your bone scan are through, you will be able to decide what treatment option you prefer.

We try to live by the dictum that 'I've got cancer, but cancer hasn't got me'.

Right at the moment, I am giving far more thought to how I will keep the grandchildren amused at half-term holiday, than I am about my next stage of cancer treatment.  Life is for living, since diagnosis I have been blessed with grandchildren and wonderful holidays, Amsterdam, Corfu, Malta, Tenerife, Madeira, Toronto, even a week in Penzance.

So cheer up, you can have lots of fun and live many years with a Gleason 9 diagnosis.

:)

Dave

     

User
Posted 03 Feb 2017 at 12:56

And from another Gleason 9; I'm still bouncing around 3.5 years after being diagnosed. When I was first diagnosed I thought I'd be dead by Christmas. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

User
Posted 03 Feb 2017 at 13:07

I think it helps if you understand that aggressive doesn't mean what you imagine. It makes it sound like the cancer is running amok and taking over your body but generally that isn't the case.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Feb 2017 at 13:19

Just to welcome you to the site. The others have it all covered with their advice although apart from the link that flexi gave you could look at downloading the whole Toolkit which is available from Publications.

Lots of info in there.

Anything you want to know just ask, somebody is likely to have been there, done that and has bought the T.Shirt

No question is silly or too personal.

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 03 Feb 2017 at 14:38

Tony

 

I'm 46 and Gleason 9.  I had my prostate removed just before Christmas.

The thing which honestly helped me most were the guys (and wives) who told their stories of Gleason 9 and how they are still around many, many years later.  It made me realise that I'm not going to die anytime soon and have several really good quality years to look forward to.

You'll be in a better place once you've had your scans as at least you'll have a lot more information.  The waiting around is tough.

Everyone on this forum is helpful and encouraging and some people are very knowledgeable.  The PCUK specialist nurses are great too - give them a call.

You'll have people on this forum who will walk with you through the journey.  

Walter

User
Posted 03 Feb 2017 at 15:56
Hi I am 51 Gleson 9, diagnosed 30 months ago, like I imagine you are going through I thought it was the end however since then I have run marathons, completed in ultra marathons accross the Sahara and am still running, I am doing a 66 mile race tomorrow so there are lots of reasons to bllieve that you will be here for ages. That said, cancer has made me live for every day and bizarrely I have probably had a better life for the last 18 month so than I would have done before as I love life more than ever.

There are lots of us here not just hanging on but standing tall still so keep posting, asking questions and above all believe, never give up!

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 04 Feb 2017 at 04:55

Wow!!! initial responses to my first post have lifted me alot.
I spent most of yesterday breaking down every time I seen the wife or kids.
The fact that I left hospital after diagnosis with the word "aggressive cancer" ringing in my ear has really spooked me. This on top of reading into the Gleeson 9 score and genuinly believing I didnt have long to live - sounds crazy but that is all that was registering yesterday. I think there should be more thought goes into how these things are explained initially although I do understand it pays you at times to prepare for the worst.
Did anyone still have discomfort almost 2 weeks after their biopsy as I still feel a bit raw down there?
My concerns at present are that I have sufferred from extreme tiredness and fatique for a few years now and it may just be paranoia but I have a lot of aches and pains which as yet are unaccounted for?
Anyway understand its not worth me fretting until after MRI & Bone scan - if I had biobsy 2 weeks ago, then when can I expect these tests. Is it right that I have to wait a full 4 weeks after the biopsy until the tests can take place.
Anyway a massive thanks to all who responded to my 1st post it genuinly has given me a lift.
Thanks Again !!!
Tony.

User
Posted 04 Feb 2017 at 07:49

Originally Posted by: Online Community Member
I think there should be more thought goes into how these things are explained initially although I do understand it pays you at times to prepare for the worst.

Aye, I well remember the exact words when I was told I had advanced prostate cancer that couldn't be cured but could be treated. With treatment, I was told I could have "many more months or years". I immediately noticed she didn't put a 'many' in front of years.

Originally Posted by: Online Community Member
Did anyone still have discomfort almost 2 weeks after their biopsy as I still feel a bit raw down there?

My prostate settled down quite quickly as I remember, a bit of blood in the poo for a couple of days, walking around like John Wayne for a few more days and after that all OK. The biopsy was a real bowl of roses. The first 3 clicks and I thought "what's everyone talking about, this doesn't hurt, it's a walk in the park". The next 3 clicks, "oh, what's that, I felt that". The next 3 clicks "ouch, I don't like this at all". The last 3 clicks and I'm sweating like a stuck pig. A pretty nurse held my hand though so that helped a lot.

Originally Posted by: Online Community Member
My concerns at present are that I have sufferred from extreme tiredness and fatique for a few years now and it may just be paranoia but I have a lot of aches and pains which as yet are unaccounted for?

I know it's hard but whatever you can do in the way of exercise will help with alleviating fatigue and aches and pains.

Originally Posted by: Online Community Member
Anyway understand its not worth me fretting until after MRI & Bone scan - if I had biobsy 2 weeks ago, then when can I expect these tests. Is it right that I have to wait a full 4 weeks after the biopsy until the tests can take place.

Can't help on this one, I had MRI, CT and bone scans prior to the biopsy.

User
Posted 04 Feb 2017 at 10:02

Yes important to have at least 2 weeks after biopsy before getting the MRI - the images can't differentiate between grey areas due to tumour and grey areas due to bruising from biopsy, areas of infection, etc.

If I could wave a wand over urology departments I would produce stickers saying "aggressive does not necessarily mean advanced" to give to newbies.

Even with scores all in, there is no way of predicting how you will do or for how long. We had a dear friend on here diagnosed with a low PSA/low Gleason/low grade cancer for whom no treatments worked. As you can see above, we have others here diagnosed with 'aggressive' cancers who remain well for many years. I am not sure that we get many with G9 or G10 who achieve proper remission but then, I don't really believe that anyone is ever truly cured

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Feb 2017 at 12:59
Hi Tony,

I know you don't want to be here (none of us do!) but welcome anyway. I can't really give much input on the Gleason side as mine was 7 but I did have a complete 'mare with the biopsy. For me it was very painful afterwards, I passed what seemed gallons of blood (with clots) and I suffered Septicemia afterwards. The biopsy is a very varied experience for everyone, some are back to work the next day, others (like myself) have bad times with it.

On the Gleason 9 front there are lots of encouraging stories on here, I think as Lyn says, the 'aggressive' word is a bit OTT. It is aggressive in prostate terms, but the cancer in general is slow growing compared to other cancers, and there are lots of treatments available with more becoming available all of the time.

Hope this helps,

Mark

User
Posted 04 Feb 2017 at 14:14

Hi Tony ,the words aggressive freaked us out too , my OH was diagnosed just over a year ago and thought our world had ended, like you Gary is Gleason 9 PSA 23 ,his biopsy was luckily straight forward with scans being done about 2 weeks later ,Mri took a bit longer as it was over the Xmas / new year period .when Gary went for results not long after scan his unfortunately had gone into lymph nodes . Treatment was started that day with hormone tablets followed 2 weeks later by the 3 monthly hormone injections .Chemo was advised and was started pretty quickly (6 sessions 3 weeks apart ) PSA levels came down pretty sharpish and he had very few side effects ,mainly muscle aches and tiredness .garys now on stampede trial arm j and doing well ,still working hard but at a slower pace and relaxing more when home ,
It's still a struggle to accept results but we can go long periods of time without it being our main topic of conversation .
Best wishes to you and family
Debby

User
Posted 05 Feb 2017 at 13:15

 tony 194

 Hello mate i have recently been diagnosed  with a gleeson score of 9 but higher PSA i too was in total shock upon the news of my cancer   its not easy, however my family are strong and they know i will need to lean on them, finding this forum is a huge help to me too Gleeson 9 is high my friend but its not the end of the world we will all help you during this time stay strong and keep in touch.

 

Baldyman

User
Posted 05 Feb 2017 at 19:11

Thanks mate really appreciatte  you taking the time out to pass on the advice !

User
Posted 05 Feb 2017 at 19:15

Cheers Baldyman,

Keep in touch and let me know how it goes.

Just had appointment for bone scan on the 13th so things starting to move quickly - just waiting for MRI then I should know where I stand?

Tony

User
Posted 05 Feb 2017 at 19:17

Thanks again all for the info - just had bone scan confirmed for the 13th but not sure how long for results.
Still waitng for MRI.
Tony.

User
Posted 05 Feb 2017 at 19:20

Thanks Deb appreciate the info and encouraging to know the hubby has come through this in some respects.

Tony.

User
Posted 07 Feb 2017 at 13:17

Just read letter to my GP as I await Bone Scan & MRI.

My cancer is described as "high risk" "high grade" prostrate cancer?

I have also rang hospital as I have had a bad back and neck since the biposy, a bit like bone pain as well as paranoia linked to what I thought was "policemans heel" in my right foot now hurting when I walk like a pressure point?

Can anyone comment on the above????

Thanks Tony.

User
Posted 07 Feb 2017 at 13:27

Hi Tony,

The"high risk" and "high grade" relates to the Gleason Grade of G9. Here's some further information from Cancer UK...

http://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/localised-prostate-cancer

The back, neck and foot ache is unlikely to be related to PCA considering your low PSA score. I'd make an appointment to discuss these with your GP.

Flexi

 

User
Posted 07 Feb 2017 at 14:10

Thanks Flexi really appreciate the response - this forums a massive lift when you are in no-mans land waiting for the Bone & MRI scans.

User
Posted 07 Feb 2017 at 14:28

Hi Tony I'm presuming that you haven't started on any meds yet ? My OH gets muscle aches and tenderness in the Achilles but that is because of the hormone injection and tablets ,it's almost as if all his old injuries are being targeted , it could be referred pain due to tension .
Good luck with results
Debby

User
Posted 18 Feb 2017 at 04:15

Hi Mate,

Hope your keeping well considering?

Just had the all clear on the bone scans which is good news - have you progressed that far yet?

MRI next week then another long wait until the 02nd of March for results which seems crazy to me.

If I hadnt rang hospital yesterday then I would also be waiting for bone scan results until the 02nd.

Tony.

 

User
Posted 18 Feb 2017 at 12:11
Great news on the bones, something to celebrate. Sadly, waiting is something we all have to get used to on the Prostate cancer bus, for you it's a scan and then result then it will be PSA tests regularly to see how the cancer is behaving on whatever treatment reigeme you are on. I am not trying to depress you but help in a small way that this is the new norm. I have a bone scan and PSA result meeting 1st March but I have realised over these last two years that worrying about it too much before is a waste of life (that said it is natural to worry a day or so before still). You can't change the results now but there will be things you can change in your life to make it better so do those things instead.

How are your back pains since biopsy, hopefully they have gone away now? Thats one "test" we won't need again, rejoice!

Enjoy the weekend

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 02 Mar 2017 at 01:50

Well its 1.48am and I am up again researching my options ref treatment - I have trawled the net for the last two weeks but obviously wasting my time until I know where I stand ref the MDT meeting and definitive prognosis.

Its been like Christmas eve today and I am finally going to know whats ahead of me today at 11.00am.

I have been running all the scenarios through my head and the best outcome I suppose I can hope for with a Gleason 9 is the chance of having an RP - The more I read up however the more the sound of Brachytherapy appeals to me with all the new advancements.  I understand this is dicated by the Cancer still being retained in the capsule, so again its all pie in the sky as I wont know until later today?

One question I have for anyone who may be able to help? I also have the dilema of qualifying for comprehensive private medical health care through my work.  This something I have never really given thought to until they contacted me and told me last week.  I have been asked by the insurers to contact them when I have a clear treatment plan, but I am torn as to what to do. My thoughts being that if the insurance only gives me a private room with a TV then why bother, although I understand there can be benefits with treatment.

I am currently under a Urology Prof at the Freeman Hospital in Newcastle, who is actually registered with my insurers which makes the question of NHS & Private a wierd one. Dont get me wrong I am your typical working class citizen and certainly pro NHS but when it comes down to it and hearing the word CANCER then I want to make sure I go down the right road.

Can anyone guide me on the above or perhaps comment on their own experiences before I am faced with making a decision?

Will post todays outcome later (fingers crossed).

 

 

User
Posted 02 Mar 2017 at 07:10

Hi Tony
Best wishes for today. It's tough to make a decision. In hindsight Bracchy HT and RT may have worked better than my op which wasn't a success. Truth is , I didn't want anyone doing anything down there. Yes I'm alive two years on , but they've probably been the worst two years of my life with more to come. I love the NHS. I've heard many a horror story but I have been treated amazingly. But if you have to stay in hospital , being on a ward is the last place in the world you want to be to recover. Noisy , unclean , risk of infection etc etc. But you have to be safer in a hospital with all the professionals at hand ?? I had a private op on my arms many years ago and it was frightful care , so much so I reported it back to Bupa.
Good luck

User
Posted 02 Mar 2017 at 07:22
Thanks mate appreciated - we have another thing in common "whippets" just bought a puppy similar to the one in your profile LOL.
User
Posted 02 Mar 2017 at 07:28

With regard to the decision on using the comprehensive private medical insurance, I'd go private because:

1. It saves the NHS money.

2. Providing it really is comprehensive, your uro/onco will be able to proceed with whatever treatment they believe is best for you and not be subject to NICE guidance or local funding constraints.

User
Posted 02 Mar 2017 at 07:43

Hi Tony194
I know how you are feeling, it is all so surreal, it's when they say those words that everything else including logic disappear, on here you will get all the support and help you need.
This forum has been invaluable to aiding and allowing me to understand what was happening to me.
I wrote an article about my whole experience from my first routing blood test to my actual RP, and although I am currently undergoing Radiation treatment (completed 31 out of 36 sessions) I still find comfort and help from these wonderful people here.
Although my experiences have been over here where I live in Spain which made it harder for me due to the language difficulties hence finding this forum, but if you are interested I can send you my article as it does give a guidance to what happens to your mental ability to absorb news when doctors give you news in their terminology.
Good luck to you and I am sure you will make a complete recover.
regards
Tony

User
Posted 02 Mar 2017 at 08:05

We went private (self funding) for the RP for only one reason - we wanted the same urologist that was already caring for my mother-in-law and father-in-law and who had done my dad's nerve-sparing RP many years before when it was still experimental but we couldn't get on his books via the NHS. The upside of going private ... nice room, op done on the first available date, we always see the consultant rather than a succession of different housemen who don't know the case, and no 2 hour waits in an overstretched clinic. The down side ... it is difficult to get back into the NHS system to get aftercare so unlike some here, no district nurse support or physio etc and it was a battle to get the referral to our local ED service. Also, no access to a urology nurse specialist or named person which other members here seem to find a great source of support. Each PSA test costs around £100 but presumably your insurers would pay that?

When the cancer came back a couple of years later we saw the oncologist privately (self funded) and he was happy to do the RT on the NHS but we pay for private consultations to review how it is going. Still no access to a nurse specialist though.

I think much depends on what happens today - your nearby private hospital may be great for surgery but not equipped for RT, or your consultant may know that if you have the treatment privately your CCG will not pay for aftercare, or he might say we'll have it done on the NHS but use the insurance for private consultations rather than come to clinic.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Mar 2017 at 08:12

Happy, I would be pleased to read your article.

 

In case members on here were not interested in it, would you be so kind to send it to my inbox?

User
Posted 02 Mar 2017 at 08:44
Thanks

I have private medical insurance. Try getting back into a private hospital on a Saturday morning when you are in retention, where do you finish up ? In the NHS Hospitial. It does help if your private consultant also works at the NHS Hospitial. My hospital has a Urology ward so most of the nurses are very experienced with urology issues.

As already said the NHS support network is there. In my hospital we have a direct line to someone in Urology 24/7.

Thanks Chris

User
Posted 02 Mar 2017 at 10:16

We have been treated privately from the beginning as my husband was diagnosed privately. My OH had a robotic RP also done privately.
We have found that in our area there is a lot of crossover between the private and NHS care. So the OP was done on a Saturday by two top consultants (which for me was the biggest benefit) but it was carried out in the NHS hospital where both consultants are based. He was looked after on an NHS ward albeit he got a side room to himself but had the NHS needed that bed for infection control he would have been on the ward with everyone else.
We also got hit by the bed crisis and op was delayed a couple of weeks. If it had been NHS it could have been more as surgical lists were cancelled for over a week at one point.
There is no private equivalent of an MDT but in our case the private patients are discussed in the NHS meeting.
As Lyn said you do not get a dedicated nursing team and this sometimes has left us feeling a bit isolated.
All of the emergency numbers we were given after the OP were for NHS services so when we had catheter issues we spoke to an NHS urology nurse.
We have already spoken to our GP and she doesn't see an issue with transferring back to the NHS after our 6 week check up. We will make a decision on that when we know if and what follow up is required.
Finally your cover is only good whilst you remain insured by the same provider so if you change jobs or leave work you will no longer have cover because the new provider will see it as a pre-existing condition.
Good luck whatever you choose.

Edited by member 02 Mar 2017 at 10:17  | Reason: Not specified

User
Posted 02 Mar 2017 at 12:09

Tony,

Some very good responses above regarding private or NHS.

I think Lyn's comments are very useful as usual and show up both sides of the argument very well

As for myself, all my treatments have been private and I have no complaints at all about my treatment so far and everything has been dealt with efficiently, although I am sure most people going through the NHS say the same.

Furthermore going private saves the NHS money.

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 02 Mar 2017 at 19:32

..... and here are todays scores on the doors after consultation.

Bit of a wierd one really, as was told that bone scans were clear again and that the MRI did not show clearly the PC that had been identified in my biopsy. The MDT team were completely baffled by the lack of show, so they requested that the pathologists report was revisited. The gleason 9 rating was again confirmed and today I was told that the cancer is aggressive and very high risk for a man of my age 51. In summary no real surprises other than they have advised that I go with Radical Prostatectomy Robotic De Vinci - the down side being that all my Cancer is located on one side, so Prof said he would have to "dig deep" on one side and defo lose nerves and surrounding tissues.  Understand the opposite side will survive somewhat?

I am confused a little, as if the cancer is contained in the prostrate which was confirmed - then why remove tissue beyond the prostrate on one side. I was also told that the Gleason 9 rating meant that Brachytherapy was not an option.

I did ask the Urologist/Prof his opinion on the Private vs NHS dilema I have and he quickly said I would be wasting my time.  This as the clinic would supply no additional benefits, even though they are all registered in name with my insurers. So jury still out on this one.

Although I had a decent meeting today, the only thing I didnt get was my staging (assuming this will be T1 or T2) or could it be that they are holding this back if the MRI did not clearly show the PC as they had expected?

A great deal to digest but would appreciate any relevent comments on summary above - BTW booked to have the RP on the 03rd of April so any advice also welcome ref the comments above.

Thanks All !

   

   

 
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